Pheochromocytoma Adrenal Gland Rare Tumor

Pheochromocytoma Adrenal Gland Rare Tumor

I’ve just been diagnosed with a Pheochromocytoma of the Adrenal
Gland, after 7 years of suffering many very common symptoms that
are very attributable to other aliments. In combination, along with
the blood/urine tests that I self advocated for, they pointed
immediately to this very rare tumor…one in a million have been
diagnosed.

If you have Migraine Headaches, Hyperhydrosis or Hot Flash like
sweating, Anxiety Attacks, very High Blood pressure, and severe
heart palpatations and pressure in your chest or difficult
breathing, with fatigue; you may have this rare condition.

I am a 60 year old female who has suffered with this for 7 years,
and have been treated for Migraine Ocular Headaches with
medication; Post Menopausal Hot flashes with medications,
Depression Anxiety with anti-depressants, told to exercise more and
get into better shape which would make my heart stronger and reduce
the heart palpatations.

Only after discovering Dr. Elizabeth Vliet’s books on Hormone
Balancing did I recognize that all of my disjointed symptoms were
probably related to a Hormone disorder. I took the list of her
recommended testing to my primary care physician, we immediately
took action and seven days later I had a positive diagnosis that I
had 100 times the normal Adrenaline secretion and the
Pheochromocytoma tumor and the next week was confirmed by a CT scan
of the Adrenal Gland.

My next challenge was to find an Endocrinologist and Minimal
Invasive Surgeon who had successfully treated a Pheochromocytoma. I
found an experienced team at Mayo Clinic Phoenix. My pre-op care is
the most important part of this treatment, which will stablize my
blood pressure so that when the Adrenal Gland is removed my
pressure will not plummet. This surgery is a “very delicate
balance” of removing the adrenal gland,and stablizing my blood
pressure and hormone levels.

Surgery is scheduled for November 3rd, and I will write more on the
outcome. You can visit Dr. Vliet’s website at www.herplace.com to learn more about
Hormone Balancing.

Pheochromocytoma Adrenal Gland Rare Tumor

Hi! I am 41 and I had this surgery on September 10, 2008. The
name was different but the symptoms and the tumor are the same.
They did it laparoscopically on my left side and removed the gland
along with the tumor. Prior to the surgery my b/p was 212/110 with
6 meds and 10 potassium supplements. I was out of work for 3 weeks
but I could have easily went back in 2. At first it is not easy to
get comfortable but it gets better rather quickly. Heat on the
wounds helped me. I only needed the pain killers while I was in the
hospital. Xtra Strength Tynenol is all I took at home. I had so
much energy and only slept a few hours at a time whereas prior to
surgery I slept ALL the time….even at
work! I have no regrets at all for the surgery and I feel awesome
now. I’m only on 1 b/p bill (fluid pill) which is common if you
have had high b/p for years. I had it for 17 years—since I was 24.
The way this was found in me was that my hubby thought I was having
a heart attack and so did the docs. After all the tests came back
fine the doc decided on the test for this and it was confirmed by
an MRI. It took from July 4 to Sept 12 to
get the surgery done but again..no regrets. I recommend education
yourself on the net about the disease as it is very rare (1% of
high blood pressure patients have adrenal problems and less than 1%
of those have a tumor). The tumor is more than likely
non-cancerous! Good luck and let me know how it goes.

Pheochromocytoma Adrenal Gland Rare Tumor

Oh I thought of a few more things to tell you. The most
uncomfortable part of the whole surgery is the soreness of the way
I had to lay. I had to be on my side and they lifted my hips to
move my ribs so they could get a better area for the surgery. My
hips really hurt and where they had to “push” aside organs my lungs
hurt so its very important to do deep breathing exercises
afterwards so you don’t get pheunomia. Also, my b/p didn’t come
down for 2 weeks after surgery. I went home with all of my b/p
bills. Some people it comes down immediately and others like me
sometimes it takes a few weeks or a few months but don’t give up.
Its well worth it. Take your time recovering and don’t over do.
Only do what your body allows you to do. Don’t lift especially for
the first couple of weeks. Not even a bag of potatoes. Any
stressful lifting couple make the stitches come out or cause a
hernia. This also includes vacuuming. My PC was unfamiliar with
this condition and through my research I was able to help him..
lol. But seriously, good luck with the surgery and even though I
don’t know you I’ll be thinking of you. I hope you will let me know
how you make out either on here or you can email me directly
jrrtt88fan@yahoo.com. I
want to be here for you because I didn’t have anyone. The message
boards I found kept telling me not to do it and treat with meds.
But I went with my heart and how I felt and took the chance and
don’t regret one minute. Take care!! Peggy

Pheochromocytoma Adrenal Gland Rare Tumor

Hi Peggy, on the eve of my surgery, I really appreciate your
perspective. I especially appreciate your insight about the
surgical positioning, and hips, etc. I have been told about the
deep breathing, but didn’t really know why. I am only on one BP
medication, but have had pressure at 210/100 episodes, and really
look forward to eliminating them, they do remind you of a massive
heart attack. My surgery is at 9:00am tomorrow, and my husband will
be posting updates. Again, thank you for your openess and support.
I am very optimistic about having this surgery.

Pheochromocytoma Adrenal Gland Rare Tumor

I’m 29, female & had this surgery on 28-Apr-2008. I had all the
symptons for Phaeocromocytoma tumour since 2-Jan-2007. However, the
doctors diagnose as a lympha tumour. They did laparoscopically on
my right side. During surgery, my b/p was about the same with
“pgithabrn”. Tumour successful removed with 6cm diameter. Due to
the surgery was prepared for the wrong diagnose, my life was in
danger. I’ve got TB after one day of surgery. My recovery progress
is very slow, not sure is due to I have allergy to Paracetamol or
not, lack depend on pain killer actually. And at 30-Aug-2008, I was
diagnose that a cyst at ovary causing unknown lower abdomen
pain.

Just to share my story. As I know the surgery is very rare to
success due to wrong diagnosis. As I see your doctor diagnose it
correctly & do a lot of preparations. I sincerely hope your
surgery is very success.

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Pheochromocytoma Adrenal Gland Rare Tumor

Posted Mar 30, 2009 5:06pm by `

AT MAO NOW. HAVE 2 ADRENAL TUMORS/HIGH BP. ANYONE
HAVE SIMILAR?

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Pheochromocytoma Adrenal Gland Rare Tumor

Posted Jun 18, 2009 6:40pm by `

I am meeting with an endocrine surgeon next week at MGH to see about removal of a pheo that was just
diagnosed. It was an incidental find during a CT scan that has been
confirmed through blood, urine and an MIBG scan. I have a long list of questions for the
surgeon and the endocrinologist but would love to hear what it is
like for people after the surgery. I have no symptoms, low blood
pressure, never sweat. I am a very detailed person, very focused,
some would say intense. Will I be less so after the surgery? Can
anyone share their experience with changes in their personality
once there are few catecholomines rushing through your body?

`
1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Aug 1, 2009 2:18am by `

In 1992, our then 5-year-old daughter was diagnosed with a pheo
by a wonderful medical team at CHLA. It
took 4 months to block the epinephrine and nor-epinephrine
secretions enough to perform surgery. During those 4 months, every
6 hours I recorded her BP, heartrate, temperature and medications
and faxed the information to her doctors on a weekly basis. Prior
to surgery, Kristin’s skin tone was gray and she weighed less than
30 pounds. Within hours of having her right adrenal gland removed,
she was rosy cheeked. Within 48 hours she was pushing her IV pole
down the hall and 3 days later she was released from the hospital
and resumed a normal, medication-free life. Unfortunately, when she
was 16 Kris began experiencing headaches, gastrointestinal pain,
and rapid heartbeat. She had another pheo in her remaining adrenal
gland which required a second adrenalectomy. Genetic testing
revealed no underlying cause or predispostion for these tumors so
the most difficult adjustment has been in taking two types of
steroids twice a day and adjusting her dosage to compensate when
her body is stressed. There have been personality changes that
Kristin knows are related to a changing body chemistry. Like anyone
afflicted with a serious illness, she has learned to adjust her
lifestyle and count every day as a blessing. Her most recent
blessing is that she graduated with a bachelor’s degree in
accounting and on August 22, 2009 will marry an amazing young
man.

`
2 posts

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Sep 3, 2009 7:32pm by `

I am new to this group and happy that I found it. I have been
going through extensive testing for the adrenal tumor they found by
CAT scan. Have not been diagnosed with a
pheo yet, but one of my 24-hr urine tests showed high cortisol.
Have found an adrenal tumor specialist at Stanford University who
is doing further testing, etc. The other docs have said that since
I do not have high blood pressure (it’s actually really low) that I
probably don’t have a pheo. But I have had attacks of high anxiety,
night sweats, weight loss, adominal pain and insomnia – just to
name a few. This usually happens after a stressful period in my
life.
I was just wondering about others who have had a tumor and their
symptoms. I see that most of you had high blood pressure, etc. Is
it possible to not have high blood pressure and have a pheo?? This
has been a scary time and any support would be appreciated. I am 57
and live in San Jose, Ca. thanks

`
1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Sep 12, 2009 12:05am by `

Hello fellow pheocrats,
I stumbled upon this site after googling pheo info. and was pleased
at reading about the same symptoms I was experiencing before my
surgery on sept 3rd 09,
I am a 44 year old male, in shape, no smoking ,normal blood
pressure and was diagnosed with a pheochromocytoma after a bout
with abdominal pain and a precationary ct scan. There it was in
plain site and the beginning of its removal was in motion!! yesss.
The joys and jubulation of finding the cause of a condition that is
tough to explain is in itself worth celebrating.
Before my surgery I was always sleepy (just like pgithabrn above),
took a lot of naps, I think after years in this condition you just
fall into the status quo and dont think to much about it. I think
it has to do with the adrenalin and who knows what else flowing
through your veins at night preventing deep sleep. The first thing
I noticed after the surgery was being able to get a good nights
rest!!and thus a lot more energy during the day to function much
better.

To answer Deborah in Ca. I didnt have high blood pressure but my
norepinephrin level was at 630 with a ref. range of 15-100 and
epinephrin level was at 57 with a ref. range of 2-24. Much higher
then what they should have been at time of testing, nailing down
the diagnosis for a pheo. The only real symptoms I had were two
severe ( and I mean severe)abdominal pain episodes lasting 4-5 hrs
each spaced three years apart.
Hope that helps you on your road to recovery. Phil

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Pheochromocytoma Adrenal Gland Rare Tumor

Posted Sep 14, 2009 3:49pm by `

I am so glad I found this page. My husband had a heart attack 12
years ago and has been having symptoms of heachaches, difficulty
breathing, pain in the chest, very high blood pressure, nausea,
sweating, anxiety, fatigue, etc. He is the hospital 3-4 times a
year for the past 8-10 years. We don’t even answer our phone
anymore because we owe so much in medical bills. The best insurance
my company has we still have to pay 20% on most things. My husband
was just told today that he may have this PCC thing. I actually hope so. We are so very tired,
emotionally and fincially exhausted. I was reading about the woman
above who had this for 7 years. They test and diagnose you with
everything and give you lots of drugs, but nothing seems to help.
His heart doctor thinks he is a hypochondriac and checks his heart,
says it’s fine and blows him off. He says he feels like he is going
crazy. He has all these symptoms, but no one seems to care. Or when
they do, they can’t find anything. It’s nice to read about people
who understand.

`
2 posts

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Sep 28, 2009 6:37pm by `

Wanted to say thanks to mincemeat for responding to my BP
question. Nice to hear from others! So far my doctor is waiting to
do surgery until possibly November (doing another MRI). My DHEA level is high
and still have unusally low BP but other than that all other tests
were in normal range. (cortisol now normal) My specialist said he
was convinced that the scan shows a pheo. I believe i have had this
for over 10 years due to all the episodes I have had. To Debby B. –
I can relate to how your husband feels. I was also told I was a
hypochodriac, or depressed or just anxious. I felt such relief when
they found the tumor on my adrenal because I felt validated when I
kept telling the doctors that there is something wrong. Hang in
there.

`
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Pheochromocytoma Adrenal Gland Rare Tumor

Posted Oct 10, 2009 10:46pm by `

I wish I would have found this site before my surgery, when I
was getting up everyday for two months straight feeling I was going
to die. I always knew there was something wrong with me, but like
most of you here I was being misdiagnosed and told I was creating
the anxiety. It took me getting operated for my appendix and that
wound not healing in a timely fashion and reopening for the tumor
to be found through a scan. DeborahJP, I also live in SJ and like
you I did not have high blood pressure. My pressure is usually low
and for a long time all I had was anxiety and just rushes of energy
and then falls of exhaustion. I offer my support anyway I can. My
regular email is rosalindaz@hotmail.com.

`
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Pheochromocytoma Adrenal Gland Rare Tumor

Posted Oct 22, 2009 10:11pm by `

I was diagnosed as having a Pheo last monday. I am terrified of
the thought of not finding a good doctor. I am relieved that
finally I was diagnosed and it was not all in my head! Headaches,
restless nights, uncontrolled high blood pressure that wont come
down with the conventional medications (I thought that my patients
where so LUCKY -they take the BP med and
it comes down in …20 minutes!) not me. The 24 hour urine test has
at least 20 times more of the hormones that it should have, I’ll be
re-tested in 2 weeks anyways but my Dr. is certain that this is
what I have. Of course more testing (MRI, the genetic test…and all
of them) will be done in the near future…I just have to find a
doctor specialized in this.
Please give me some recommendations on where did you get your
surgery and Doctors names. I live in South Texas, and here there is
no good Doctor that is going to be specialized for this rare tumor.
I thank God that I found this list, I’ve been dealing for all this
symptoms at least 10 years. My doctor who is an internist wants to
refer me to Baylor Medical Hospital in Houston…but I am not quite
sure until I get to know if the surgeon has experience in this
procedure. Please send me some info on who did your surgery. My
regular email is murielgomez@live.com thanks!!

`
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Pheochromocytoma Adrenal Gland Rare Tumor

Posted Nov 1, 2009 5:51pm by `

I was diagnosed with a pheochromocytoma a couple of weeks ago. I
have been having brief episodes of extremely high blood pressure
(235/120) for several months. My doctor kept telling me it was just
panic attacks, but I knew better. I did some internet research, and
told him that I thought I had a pheochromocytoma. He laughed and
told me I’ve been watching too many episodes of “House” (I don’t
watch it at all). A few weeks later I was back at his office
because the anti-depressant he had prescribed didn’t do anything.
He prescribed Xanax, which did nothing but make me sleepy. At least
at night I remained groggy through the episodes, and I was able to
go back to sleep much more quickly, but it didn’t stop the
episodes.

I had my own blood pressure monitor and I would use it when I was
having an episode. I showed my doctor the BP monitor, which keeps a
record of each test, and his advice was to stop using the BP
monitor! He told me that I was probably exacerbating the anxiety by
testing my BP!

I finally convinced him to do the 24 hour urine test. He told me
flat out that he thought it was a waste of money, but he did it
anyway. A few days after I dropped off the pee bottle, he called me
up and sheepishly told me that it looks as if I might have been
right. He scheduled me with an endocrinologist, who sent me to get
an MRI, and the MRI confirmed the pheo.

The moral here is DON’T GIVE UP ON THE DIAGNOSIS! I read on the internet the
other day that 50% of pheos are diagnosed in autopsy! That means
that half the people who get them die from them without ever even
knowing why they had those crazy symptoms. These things are always
fatal if not diagnosed and treated. I only discovered mine because
of the internet. Ten or twenty years ago I would have had to rely
on my doctor for the diagnosis, and as I’ve seen, doctors aren’t
perfect. Thank God for the internet. It saved my life.

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1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Nov 10, 2009 8:28am by `

I was diagnosed with Pheo, six months ago. The groweth was
discovered during a ultra sound.Been waiting to see Surgeon.I’m
living in NL, Canada.
Anyone here in NL or anywhere in Canada,who have this problem or
have had surgery know where I can fine a good DR. who specialize in
Pheochromocytoma.
Thanks

`
2 posts

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Nov 11, 2009 4:25am by `

Hello,I was researching adrenal problems and found this.I went
to my first endocrinologist yesterday after requesting to be
referred for years.I also have been accused of being a
hypochondriac,drug addict or just lazy.I do not know if I have
Pheochromocytoma.The Doctor did mention it and has ordered blood
work and 24 hour urinalysis.I only have mild blood pressure
problems such as 150/90 is usually where mine stays.My main
problems are rapid resting heart rate,extreme muscle fatigue and
very slow recovery after my muscles are fatigued.The Dr. was not
too confident about the Pheo because I do not seem to suffer the
stomach pains and my blood pressure is slightly elevated.I am 31
and have had whatever this is since 17.I have had my heart
thoroughly checked and no abnormalities have been found to explain
the rapid heart rate.I had heart tests ran for approximately 6
hours a month ago and my heart rate never got below 130 bpm and
went as high as 180 bpm at rest.The heart rate problem does not
happen every day so most of the time I do go to the Dr. it is
normal or when it is that high they assume I am taking amphetamines
or crystal meth(if there is even a difference).The symptoms I am
reading on here seem so similar to mine and I am sure There is
something adrenal going on.I just wanted to ask if anyone who has
this has had the rapid heart rate with slightly elevated blood
pressure.I take morphine daily from where I broke my back a few
years ago,so that could mask the abdominal pain issue.The Dr. also
talked about a possible tumor on my pituitary gland and to most
this would be bad news,but I am to the point I have to know what is
going on with me,good or bad.I would actually be relieved if a
tumor was found on either my adrenal gland or pituitary gland.I am
tired of being 31 and not being able to do stuff 60-70 year old’s
can do physically and being told I am just lazy or a hypochondriac
because I have so many different symptoms.Sorry to take up so much
space,but I just felt like venting some of my frustrations to
people who may understand what I am going through.I will post again
when my Dr. finds out something.Thanks for every one who read my
list of problems,but from what I have read most can relate to them
on this forum.

`
1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Dec 4, 2009 10:27pm by `

I have just had my first visit with a cardiologist and says this
may be what is going on. I have been taken by ambulance to the
hospital for rapid heart beat (pounding)twice in two weeks. Now
that I read more about it I am begining to think he is right on.
But like most my blood pressure is low until I have these attack
like episodes, so I guess it is hard to figure out. Anyone out
there that can give me some information that would help I would be
very greatful…

`
2 posts

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Dec 13, 2009 5:43am by `

I went to my follow up visit with my endocrinologist yesterday
and with the great luck I have,the lab messed up the orders and did
not check for the metanephrines in the 24 hour urine sample.My Dr.
told me that was the most important part of the test.So apparently
she suspects a pheo.She did get to experience my rapid heart rate
as it was 160 bpm at her office.She suggested I have an ekg with it
that high and I told her that I have had probably 10 ekg’s for that
problem over the years and it is always normal.Maybe this will help
convince her that I am not making all this up.The thing that
worries me the most is that the rapid heart rate comes and goes
whenever it wants,I can not control it.It may do it 4-5 times a
week or 4-5 times a month lasting from 3-8 hours at a time.I am
worried that even though I am having this 24 hour urine test what
if I do not have a spell during the testing period will it still
show elevated metanephrine levels or do I have to have a spell in
that period for it to show up.After reading the symptoms I am about
99% sure this is my problem,but this waiting month after month for
test results and then them being messed up is getting old.I have
three wonderful children I would love to play with,but can’t
because of lack of energy.I hope this test shows what I already
know and the Dr.’s get started fixing this 14 year nightmare I have
been living with.Also I have a come and go pain in my right mid
back area about two inches from my spine that has been occurring
for about 10 years.Sometimes this pain is very severe,but my Dr.
says adrenal tumors usually do not hurt.Has anyone had that kind of
pain associated with a pheo.

`
1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Dec 21, 2009 7:22pm by `

Hello,
I just found this site today, and I am so happy to be part of this
group. I was diagnosed with pheo in 2003, after much tests and ct
scans they found it and the pheo was removed in July 2003 at
NIH in Washington DC. Last week, my
doctor sent me an email about the latest test on pheo, and said
that it is “moderately abnormal”, so he had to get the specialist
to look at the test result and today the doctor suggested that I do
a 24 hour urine test. First I went into a near panic attach! Almost
passed out, I felt so scared so lonely, so helpless just the
thought of it. I sat down and prayed and calm down and realized
that I have help.

I wonders if the pheo has come back..I understand that this is very
rare, but it can be cured..anyone out there had similar
experience?

`
1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Dec 23, 2009 12:47am by `

Hello fellow sufferers. I’ve had horrible headache reactions to
veiny cheese, some red wines, etc. for years now, and didn’t know
they were actually hypertensive crises til last week. Yes, pheo s
react badly to “high-tyramine” foods, and u can pretty much kill
yourself with what you eat . I drove myself to ER with such a
horrible pain in my head, neck, and eyes that I thought the top of
my skull was lifting off. BP 201/155, and
blood vessels begimnning to leak in my eyes. Sent for brain
cat-scan (normal.a miracle), given clonodine orally, and left for
three hours without even a bp monitor!! When bp fell to 177/120, I
was released with an RX for Lisinopril 10mg once daily, which
actually hasn’t helped at all. Bought a medical grade BP monitor,
and it has swung from 200/159 to 84/54 in the last few days.Learned
about pheos online, and had an aunt who died of one at age 59. Of
course it’s Christmas week and I am throwing myself at every local
MD asking for the urine and blood tests and for better
bp-controlling medicine til I can get this thing outof me, to no
avail.
And youngun38, yes, I have felt weird pressure and pain over my rt
kidney for years, esp. when in smoky rooms.
Going to family physician tomorrow, at the very LEAST to get a better med. Will keep u posted.

`
1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Dec 24, 2009 7:52am by `

I am new to this site. I have been diagnosed with
pheochromocytoma paraganglioma recently. After a MIBG Scan the recommendation is not operate because
of the sizes. The only symptoms I have had are the sweats and some
slight panic attacks like symptoms. My blood pressure has just
begun to be elevated and am taking meds to control. I have been
told that my physcian needs to research clinical trials for
treatment. Is there anyone out there who can not have the
surgery?

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1 post

Pheochromocytoma Adrenal Gland Rare Tumor

Posted Jan 7, 2010 1:52am by `

I am so glad that I found this list. Thank you all for your
sharings. I was diagnosed as having Pheo last week via a
CAT scan when I was hospitalized due to
chest pain and BP swung from 220/120 to 85/37 in a few hours. I
have high blood pressure for 9 years, and with all the Pheo
symptoms except no problem with my sleep. I think I might have this
tumor for 10 years. I live in San Jose area. Any recommendation on
how to find a good surgery doctor for Pheo will be very helpful.
Thanks!